Abstract

The proposed study is anticipated to commence in January 2011 with interviews of carers and people with MND, sourced initially through the member registry of the MND Association of Western Australia (MNDAWA). The purpose of these open-ended interviews is to assess their understanding of new Western Australian (WA) legislation relating to Advanced Health Directives (AHD) and Enduring Power of Guardianship (EPG) and individual needs of people with MND in relation to end-of-life care issues.

Thematic analysis of the interviews is anticipated to articulate key areas for support for people with MND, particularly how to target education packages specific to their needs.

To date, much of the research relating to MND relates to finding a cause or cure. Little research has been undertaken to establish the needs of people diagnosed with MND and no research has been undertaken in WA in relation to the new AHD/EPG legislation. The significance of this proposed research is to provide a baseline of understanding in the specific target community of their knowledge about this legislation and how it may be utilised to support their health care management when they are unable to articulate their desires as their disease progresses.

The findings from this research will be transferable to other neurological conditions, as well as other progressive degenerative diseases. It may be useful in community care situations as well as hospice and tertiary hospitals in the event of admission.